Friday, February 28, 2014

I haven't thought about this subject for quite a while, but I am writing about it for a good cause. When I am done, I will be submitting this post to a blog carnival over at Restoring Quality of Life: the official blog of the Partnership for Palliative Care.

I've done so much sharing here for over 6 years now. While I was a bit hesitant when I first started, I honestly don't give this topic a second thought anymore. In fact, when I'm not able to post as often as I would like, I actually feel like something is seriously missing in my life. And from comments I get, I know my readers miss me too when I post less frequently!

So with the power of hindsight behind me, I put my thinking cap on and uncovered 3 main reasons why I continue to share my struggles with chronic illness so publicly.

Reason #1: To Connect with Others

Ten years ago, I was a very outgoing and social person. I loved going out with my friends to concerts, dance clubs, restaurants and the movies. I loved going shopping all by myself for hours at the mall. I bowled with my hubby in 2 leagues at our local alley, meeting many new friends. I was someone who didn't mind driving all around town to meet up with friends and visit interesting places!

Ten years ago, I was a clinical social worker with 11 years work experience. I worked full-time and I interacted with lots and lots of people every day. At my last position, I even volunteered for the events committee, planning workplace parties and other fun activities with and for my co-workers.

Then 2004, a trip-and-fall accident resulted in the chronic pain and fatigue of fibromyalgia, which took all of these things, and more, away from me.

Now, leaving the house to do something fun with my hubby or friends is like running a marathon. It makes my pain worse, it disrupts my fragile equilibrium and it often pushes me beyond my limits. The unavoidable increase in pain and fatigue makes me feel physically awful and mentally anxious and irritable. In those moments of increased symptoms, I find myself cursing my chronic illness for the devastating effects it has on me.

So I decided to start sharing stories about my life with chronic illness through a blog and on Twitter. Like a fisherman's net, I threw myself out there to see if I could connect with anyone. And through the magic of the Internet and the act of sharing my thoughts, feelings and experiences in a search engine friendly format, I attracted others to my blog and Twitter account. Over time, my posts and tweets became my ticket to the online chronic illness community.

And just like that, I started meeting new people and being social again in ways that fit with my "new" life.

Reason #2: To Share the Illness Experience

When I began my "new" life with the chronic pain and fatigue of fibromyalgia, I wasn't quite sure what to do. Initially, I looked to my medical providers to diagnose my illness and prescribe some kind of treatment that would get me back to normal. As the weeks turned into months and the months turned into years, it started becoming clear that my doctors were going to be able to fix me.

Thinking back to my cancer experience 16 years before, I realized that to live my best life with chronic illness, I was going to need the support, wisdom and guidance of other people living with fibromyalgia and chronic pain to help me figure out what to do next.

In 1988, I was lucky to find a young adult cancer survivor group after I finished my leukemia treatment. They helped me make sense of my cancer experience and find the strength and courage to put my life back together after it was so completely disrupted. I learned that sharing about my illness with other people helped motivate me to turn life's lemons into lemonade. And listening to the stories of others in similar situations to my own, about their struggles and successes, helped me to accept and master my own illness experience. Positive peer influence and support for me are magical, life-affirming gifts.

So with this new challenge facing me, I started looking for an in-person support group. Much to my dismay, I had no luck! Then I realized that if other people living with fibromyalgia were like me, attending a weekly support group might be a nearly impossible task.

Then a "healthy" friend introduce me to blogging, Twitter and Facebook. Wanting to make new friends and new connections, I drove in and gave social media a try.

Six years later, social media is a permanent part of my life. I've learned how to ask for support and, in return, give support to others in these virtual groups and forums. I simply can't imagine my life without this unique way of sharing my illness experience. I feel I am truly part of a community that is accessible, convenient and, most of all, caring.

Reason #3: To Give to My Hubby and IRL Friends Some Downtime

This might seem strange, but having multiple sources of support in my life not only makes my life better, it makes life better for my hubby too. Because let's be honest: the people who live with us and/or interact with us the most really need to have a break from us and our chronic illnesses every now and again.

Being the social person that I am, it is in my nature to want to share everything with my hubby and my friends. I'm not shy about asking for a compassionate ear when I need a little understanding, empathy and support. But since the illness I am dealing with is chronic, i.e. an illness that I will live with for the rest of my life, there is a real risk of burning out my support system from overuse. I care about my hubby and my friends too much to let that happen.

With support needs that are sometimes big and definitely ongoing, I know I need more than just a few people "in real life (IRL)" to lend me an ear when I need one. Thankfully I've found the extended support network I need in the virtual communities that social media is able to create and support. I can access this support any time, quickly and easily, through my computer or smartphone.

Final Thoughts

As with all things in this life, social media isn't perfect. I've encountered misunderstandings, miscommunications, hurt feelings (mostly unintentional), meltdowns and even the occasional fight. Social media can be intimidating at first and there is definitely a learning curve. I found it easiest to observe more and interact less at first, a.k.a. be a lurker. But since most of the rules are literally unwritten, I found the "watch and learn" approach worked best for me.

That said, for the most part, I've found the chronic illness community to be wonderfully polite, supportive, accepting and caring. But then again, most of us participating in this community have a shared purpose: to live our best lives despite chronic illness. I think this really helps keep the conversations and interactions focus and helpful.

Now if only I could find a way to meet all my lovely new friends living with chronic illness in-person!

Friday, February 14, 2014

Happy Valentine's Day! I can't think of a better day to talk about how chronic illness affects my most important relationship: the one with my hubby of over 15 years.

Robert and I met when I was a freshman at UCLA in 1984. He and I were friends in 1988 when I was diagnosed with leukemia. While he didn't see much of my day-to-day struggle with month-long hospitalizations and chemotherapy treatments, he also didn't vanish like some of my other friends and family members did.

In 1990, when he first told me he loved me and wanted to go out with me, I freaked out. Between getting dumped by a boyfriend one month into cancer treatment and trying to cope with the changes life after cancer brought me, I wasn't ready to start dating yet. So I politely told him no.

Luckily for both of us, I changed my mind 5 years later when we reconnected and rekindled our friendship.

Today, looking back on our 15 years of marriage, I've just realized that I've been living with chronic illnesses severe enough to make me unable to work for almost 10 years now. So 2/3 of our marriage has been with my sickness, not health.

I told Robert when we started talking about marriage that there was a *possibility* that my health could get worse. We both knew I had chronic Hepatitis C infection, yet ironically, that's not what has disabled me for the last 10 years.

And not even a year into our marriage, I was faced with a new health concern. I was diagnosed with type 2 diabetes, which isn't causing me any serious problems at the moment, but does require a lot of effort on my part to manage it with diet, exercise, medications and follow-up medical care.

No, the big change happened in 2004 when a trip-and-fall accident started my journey with the constant, severe pain and debilitating fatigue of fibromyalgia. That accident also worsened a pre-existing, but not yet diagnosed, condition that had been around since the end of my cancer treatment -- dysautonomia. I've also developed new health problems, like sleep apnea, which is associated with fibromyalgia. Honestly, chronic pain makes all my other health problems worse, in various degrees, and makes managing them all more challenging too.

The other day I read a poster that said, "It's true that pain changes people. Not everyone knows this, not everyone sees this truth. Pain makes you let go of things you'd rather be doing. Sometimes it's OK that the only thing you did today was breathe. Pain changes you. But it can also make you stronger." Well, Robert's had an up close and intimate view of all the ways that pain has changed me...and he's seen a lot of unpleasant, undesirable and uncomfortable things in the last 10 years.

Let me be frank and to the point. I'm less frequently my cheerful self when my pain, fatigue and sleep-deprivation are at high levels. I need more help now and Robert is the one around who can help me. As much as I plan, pace, schedule, restructure activities and rest, my ability to participate in life's activities, from mundane daily chores to fun special events, is highly unpredictable. No wonder my hubby gets irritated with me, or rather my chronic illnesses, sometimes.

My chronic illnesses don't just effect me physically; chronic illness affects my concentration and memory too. Brain fog makes me forgetful, even when he just told me what he needed me to do. Try asking for help when all of a sudden you can't remember the word for the object you need your spouse to bring to you!

If I fall apart, physically, mentally or emotionally, it is Robert who is usually there to witness it. If I have a bad day, it impacts him the most. If I am in a really bad mood, he's most likely to caught up in it. If I can't do something, he's the one that will have to do it instead.

How have we done it? I think being friends for 14 years first and then dating, getting engaged and married helps.

I try to always be polite when asking for his help and grateful for the things Robert does for me. I try to tell him thank you frequently. I've learned to take a "time out" and retreat from his presence if I am really out-of-sorts. And I take the time to explain what is going on with me, often multiple times, until he really seems to understand.

Between explanations and witnessing my behavior over the last 10 years, I think he now really knows what is up with me -- sometimes better than I do!

One thing I've needed in the past several years is his help driving me to doctors' appointments. I have to say going to my appointments and being in the examination room with me has really been an education for him! He is now very annoyed that all the medical doctors and all the medical specialists can't put his wife back together again.

Finally, one thing that is both endearing and frustrating to me is his insistence that I do as much as I can myself. His urging is a good reminder that there are activities and better days when I can still do things without his help. Of course, when I need his help and he can't see that, it's quite frustrating. But I think it shows that he hasn't given up hope that one day I'll be the Selena he fell in love with again.

I hope some day I can get better too, for myself and for him, because living and loving with chronic illness makes it hard for both of us.

Thursday, February 6, 2014

Fourteen days ago I got the flu from my husband. Seems the virus has invaded his workplace and many of his co-workers are sick too. Of course, instead of staying home and taking care of themselves, some of his co-workers continue to go to work and spread the flu to others!

I know it was serious this year because my husband actually took sick time and stayed home.

Unfortunately for me, it it pretty much impossible to avoid getting sick when you live with someone who has the flu.

Tip #1: Get a flu shot

Yes, I did get a flu shot this year. Personally, I am thankful that I did, because here in California, this year's flu outbreak is serious. The flu has killed almost 200 people this year in my state and is hitting the 18 to 49 year old age group the hardest.

In the past, I have debated over whether to get the flu shot or not. My reluctance stemmed from a flu shot I got back in 2007 which resulted in a massive migraine headache about an hour or so afterwards. Looking back, I think the real source of the headache was that the injection was made into a trigger point, which aggravated it and caused the headache. Now I ask the nurse to poke around first and select a site that isn't too painful. This strategy has prevented a repeat post-flu shot headache.

Talk to your doctor about the pros and cons of getting a flu shot. Because if you have pre-existing medical conditions like me, getting the flu can be serious, even life-threatening.

Even with the shot, you can still get the flu like I did this year. But I believe getting a flu shot this year prevented me from developing a more serious case of the flu and helped me avoid flu-related complications and hospitalization.

Tip #2: Get your family flu shots too

This year, my hubby had a "light bulb" moment. "I should get the flu shot too, should I?" he said to me. "Yes, you should," I replied.

While I am grateful he (finally) had this insight, secretly I just wanted to hit him over the head.

The flu is contagious. That means it can be passed from person to person when the virus becomes airborne through coughs, sneezes and even just talking to someone. Plus if people touch their noses and mouths, they will transfer the virus to their hands -- and our hands touch almost everything around us. Once you get the flu, you can spread the infection for 5 to 7 days.

So perhaps the best thing to do is convince those around you to get the flu shot too. It might be hard to convince them, but don't give up trying. Your family needs to know that the flu shot helps create a barrier around you that can keep you healthy.

In the past, my hubby said, "I don't get the flu and I have never gotten a flu shot." Clearly that didn't happen this year...which has lead to his change of heart.

Tip #3: Slow the spread of the virus

Things like hand washing, covering your cough or sneeze with a tissue and disinfecting surfaces can help prevent the spread of the flu. Using hand sanitizer when you are out and about might be helpful too. Training yourself not to touch your face with your hands, while hard to do, can prevent the virus from getting to where it likes to live.

The problem is, getting the people you live with to be conscientious about doing these things too might be hard. And the alternative, spraying down every surface of your home with disinfectant on a daily basis, might not be practical, affordable or good for you.

What would be most helpful is if people who were sick, especially those running a fever, would stay home and rest for a few days.

Tip #4: Antiviral drugs may help

When taken during the first 48 hours after you get the flu, antiviral medications can lessen symptoms and speed your recovery. But you also need to know what the flu symptoms are and be able to see your doctor right away to get a prescription.

In the past, I have talked to my doctor at the start of flu season and gotten a prescription ahead of time, "just in case." Somehow I forgot to have this discussion with my doctor this year. Guess it's time to create a recurring task in my calendar so I don't forget next year!

Tip #5: Get your Vitamin D in the normal range

I know that taking supplements to get my Vitamin D level back into the normal range had made a HUGE impact on my immune system. Not only have I avoided more colds and flus, when I do get sick, my symptoms are much less severe.

A rheumatologist first tested my Vitamin D level back in 2005 and discovered it was low, but I didn't begin to treat it in earnest until a few years later when the test was repeated. I am sure that rheumatologist tested me because there is a link between low Vitamin D levels and pain. You can read more about Vitamin D supplements reduce pain in fibromyalgia sufferers at Science Daily.

I wish I could tell you that taking Vitamin D has helped my fibromyalgia pain. It has not. But I am pleased that I don't get sick as often and as badly as I did before.

DISCLAIMER: This post is intended to convey general health information and is not a substitute for professional medical advice. Please consult your health care provider to make sure these tips are right for you.